DOC

How I Became Empowered to Chat Act Change

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Wednesday’s #DSMA Twitter chat was about how we, as patients living with a chronic condition, can Chat, Act and make Change. Seeing as Wednesday nights always translate to Thursday mornings here in Australia while I’m at work, I thought I’d share my thoughts from the chat here today.

One year ago, I was a shadow of my current self.

I felt very much alone with my diabetes. I didn’t know anyone else with diabetes in real life. Most of the people around me didn’t know anything about the type of diabetes that I had. Nobody saw what I had to do to manage my diabetes. The insulin injections, the blood glucose tests, and all of the frustrations and emotions that I went through at night while the door to my room was closed shut.

It was very easy for me to shy away from diabetes. The more time that lapsed since my diagnosis, the more I would keep things to myself. I didn’t want to talk about diabetes with my family at the dinner table. I didn’t want to add my voice to the conversation if it meant that I had to talk about diabetes. I didn’t want to appear weak in front of others, because of my diabetes.

I struggled to embrace the support system that I did have in my healthcare professionals. I struggled to be open and honest in front of a revolving door of endocrinologists, being in a busy young adult diabetes clinic. I would smile and nod my head as she congratulated me on my excellent hba1c level, when in my head I knew that I had woken up hypo every night in that past week. Deep down I knew that things needed to improve, but I kept telling myself that things would change next week. And then the week after that. And then in the new year.

It’s very hard to feel empowered, let alone advocate, when you live with a condition that makes your life so much different from those around you at times. One year ago, I was far from an empowered patient.

Blogging and joining in the Diabetes Online Community on Twitter has changed my life, for the better. Having those connections from others who “get it” has filled a huge gap that was missing in my diabetes management. Having a blog which I was able to pour all of my thoughts into was extremely therapeutic. Receiving words of support from others in return was an added bonus.

I would like to think that my diabetes management is a million miles better than it was a year ago. I have a genuine interest in the disease that I live with, thanks to the Diabetes Online Community. I get information and inspiration from this community every day, that I can apply towards making my own diabetes management better. I have my own thoughts, and opinions that I want to talk about, on my blog and at home. If there’s a story on the news about diabetes, we’ll talk about it at the dinner table. If something interesting happens during the day, the first thing I want to do is get home and share it on my blog.

Being an empowered patient has helped me loads with my healthcare professionals. For one, I have taken my diabetes way more seriously in this past year than I ever have previously. In recent months I addressed minor concerns with my eyes and my feet straight away. I actively pursued a cancellation when I needed to see my endocrinologist in August, rather than wait until January. I packed my supplies like a crazy person when I went on holidays in July, rather than just taking the bare essentials. And I am now seriously considering an insulin pump, because I would like to achieve better than “okay” results with my diabetes managment.

Being a part of this community empowered me to advocate for something I strongly believed in – greater access to glucose test strips for Australians through the National Diabetes Services Scheme (NDSS). And that I did, through a column for Insulin Nation in July. That column resulted in a small change to the wording on the NDSS website, something I am extremely proud of. I have blogged, and intend on writing to Minister Ley, calling for government funding towards Continious Glucose Monitoring in Australia. And I like to think that the existence of this blog is a form of advocacy in itself each and every day.

The longer that I am a part of this wonderful community, the greater my passion is for all things diabetes. That passion grows more and more with each passing day. And that’s how I am empowered to #ChatActChange.

Join the #DSMA Twitter chats every Wednesday night at 9pm US Eastern Time by following @DiabetesSocMed and the #DSMA hashtag on Twitter.

Finding My Voice Inside, and Outside of the #DOC

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One hundred posts ago, I knew nothing about diabetes beyond my own ability to live with and manage it. I was diagnosed at an age where I was able to manage diabetes independently, and didn’t need to impose what I believed to be a burden on my family.

My Mum accompanied me to all of my hospital clinic appointments and diabetes education sessions during the first year after my diagnosis. But once that first year was over and my appointments became less frequent, I began to shut my Mum out too. She would ask me how my blood sugar levels were going from time to time, and I would give vague answers. I made sure to reply in a way that she would notice bothered me. I didn’t want to talk about diabetes. I didn’t want to tell her that my numbers were imperfect. I didn’t want her to worry. And most of all, I didn’t want to impose that burden of diabetes on anyone else but myself.

I barely knew anyone with diabetes in real life. I didn’t have anyone who actually “gets” it. Every time I tried to explain diabetes to someone, I felt like I was trapped in a bubble and my voice was coming out muffled on the outside.

My doctor would always tell me “you need to get your blood sugar levels down.” He never showed a shred of understanding to what I was going through. He never asked me how I was. Or how I was coping.

Sometimes keeping diabetes to myself felt like the easier option. That was, until this blog came along. That was, until the Diabetes Online Community came into my life.

This blog has given me a voice, and a space to express those feelings that I kept to myself for so long. It’s ignited an interest, and a passion for diabetes advocacy that I never knew existed.

If there’s a conversation happening in the real world, I feel more confident to add my diabetes perspective to it. If something interesting has happened, I’ll happily bring it up at the dinner table. And most of all, I feel so motivated to write and to share here every day. Have I become the person who shouts diabetes to the world at every opportunity? No. But this blog has definitely given me the confidence to talk diabetes much more in my real life than I ever have in the past.

It’s also given me a whole community of other people with diabetes that I never knew existed. A community that motivates and inspires me every day. A community that has given me a cushion of support to soften my landing during times where I feel like I’m falling. A Diabetes Online Community that I’m so proud to be a part of.

Today marks the one hundreth post on this blog, and I really can’t thank you enough. For reading, for supporting and for accepting me into this wonderful community. Each day I want to pinch myself because it doesn’t feel real. I will be forever grateful to have found it.

One hundred posts ago, I felt alone with my diabetes. Today, I feel fulfilled.

I have found my voice, and I’m here to stay.

Here’s to a hundred more.

#DOC Burnout Day

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When I started writing this blog earlier in the year, I knew absolutely nothing about diabetes beyond my own ability to live with and manage it. I didn’t even think that there were many diabetes blogs out there, let alone good ones. And little did I know that there was a whole community of people with diabetes out there to connect with, that I had missed out on for five long years.

I joined Twitter, where a few kind people reached out and followed me. I discovered the wonderful Oz Diabetes Online Community, and have joined them every Tuesday night since. I took part in my first Diabetes Blog Week, where I connected with many other people with diabetes who I have kept in touch with ever since. I have recently signed up for TuDiabetes, which has forums filled with lively diabetes discussion. I am also starting to venture into friendly Facebook groups, and launched a Facebook page for this blog last week as well (care to send a like my way?).

The DOC ignited my passion for diabetes. The DOC is one of the best sources of inspiration, conversation, motivation and support when living with diabetes. And the DOC is by far what motivates me to write and share through this blog each and every day.

Throughout my day, I get to see what’s going on in the DOC in Australia. Some of my DOC friends in the US will post updates about how their night is going (obviously not good, if diabetes is keeping them awake!). From late afternoon, my DOC friends in the UK will begin to emerge and give us their first thoughts of the morning. And then from early evening, the biggest DOC market, the US begins to emerge. There’s always breaking news, interesting stories to read and people’s thoughts to engage my mind with.

It’s hard not to feel a little overwhelmed, or even addicted to something which runs 24 hours a day, right across the world. It certainly can be difficult to go to sleep when there’s a whole other world out there that’s awake and buzzing with information. I certainly don’t want to give up something that I feel so strongly about and get so much out of. But I absolutely hate the fact that the DOC can be very time consuming. And I do feel as though I need a break from it sometimes for the sake of my wellbeing.

Athough I don’t do it often enough, I feel good when I switch off from the DOC a few hours before bed. I feel calmer and happier. I feel good at the thought of having time to myself. And it’s far easier to fall asleep when my mind isn’t swimming with DOC thoughts and information. I would love to get into a regular habit of switching off social media for at least 10 hours at night. And I need to remind myself more often that the DOC is still going to be there to catch up with in the morning.

Ever feel like you’ve gone through a DOC burnout? Today is Diabetes Social Media Burnout Day, and Diabetes Daily invites you to share your burnout stories and tips.

Like my blog? Follow me on Facebook: facebook.com/type1writes.

A Whole New World of #DOC on TuDiabetes

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Does the DOC ever end? I’ve joined TuDiabetes recently, where I have discovered a whole new world of People With Diabetes to connect with. I’d heard of the name before, but I had no idea what it was. And it wasn’t until a prompt from my friend Rick at RADiabetes a few weeks back that I decided to join.

The biggest drawcard of TuDiabetes for me would have to be the forums, which are filled with lively, supportive discussions relating to almost anything I can think of. Chances are that if you have a question, there is probably already a discussion going on about it over on TuDiabetes. And while I’m hardly qualified to give advice, here are a few words of encouragement I’ve left in the forums recently.

In response to feelings of weakness and self defeat:

“Firstly, don’t compare yourself to others. You are your own unique, wonderful person. I’m sure that those other T1Ds have their own struggles. You probably just don’t see them, or they don’t show it in public. If anybody said diabetes was easy all of the time, they’d be lying. Secondly, don’t think of those setbacks as defeat. Think of it as knowledge you’ve gained that you can apply to the situation next time to ensure you won’t have a setback again.”

In response to not feeling human (which actually inspired last week’s post A Letter to My 17 Year Old Classmates):

“I was diagnosed a week out from my 18th birthday. Everyone else was out drinking, doing Shisha, living off Red Bull and generally abusing their bodies. And yet I was the good, sensible guy who ended up with diabetes. I get it.

Unfortunately, having diabetes means constantly having to field questions about why you’re not having cake or why you look so miserable. There’s no point in setting boundaries, because people aren’t going to remember. My best advice would be to come up with a strategy to deal with these questions, such as politely declining the cake, or politely telling the in laws you don’t feel like talking about diabetes today. Don’t let it bother you, because we all get those “stupid questions” all the time. And they only do it because they care (I know, I have a hard time believing it sometimes too!)

Finally, don’t be too hard on yourself. Diabetes is ALWAYS changing, and sometimes diabetes is more to blame when things go wrong.”

Another big drawcard of TuDiabetes is the interviews and other interactive activities which I can live stream from my computer if I so wish to. Sadly, the majority of these events happen while I’m fast asleep in the early hours of the morning! Ditto for the chat feature, which is pretty much like Facebook chat. I have my own profile page, which displays my latest activity. There are also diabetes resources and fact sheets at my disposal too.

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I know what you’re thinking – another social network? My thoughts exactly. Blogging and Twitter take up a lot of my DOC time, so I only check into TuDiabetes occasionally. However, many people do get their source of DOC support from TuDiabetes, and perhaps you will too.

You can sign up for TuDiabetes at www.tudiabetes.org.

Like my blog? Follow me on Facebook: facebook.com/type1writes.

My #OzDOC Story

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When I first started this blog a few months ago, I felt rather lost. I’d had Twitter for some time, although I thought it was absolutely stupid. I didn’t really see the point of following people I didn’t know. I felt so out of place trying to find diabetes stuff to tweet, which at the time didn’t sound even remotely interesting. And I felt like a desperate idiot tweeting my blog posts with every popular hashtag that I could think of.

Then one day, I stumbled upon somebody’s retweet from this Twitter account called the Oz Diabetes Online Community. It’s a Twitter chat for people with or affected by diabetes here in Australia. For one hour every Tuesday night, we introduce ourselves and answer a series of questions around a set topic of the week. We’ve talked about things like germs, exercise, team work, a cure and National Diabetes Week, to name a few. The best part about it is that anyone can see the chat just by typing #OzDOC into your Twitter search bar, and you don’t have to join in until you are ready.

Ever since then, OzDOC has been the place to be on a Tuesday night. OzDOC really got me started in the Twitterverse and the Diabetes Online Community, and helped me to feel less like a stranger. They are an amazing, friendly, welcoming, supportive and inspirational group of people. They were among the first of the #DOC friends that I made. Although I don’t know any of them in real life, they certainly have come to feel a little like family. And I don’t think I’ve missed a single chat since I first found it.

I feel extremely empowered having a space to share my experiences in managing diabetes, and I take a lot of inspiration from the other wonderful people there too. I love that we can all have a good laugh at ourselves, not to mention our fierce comptition for the wittiest tweet of the night. Having a wonderful community like OzDOC helps me to feel a little less alone with my diabetes. And while I love that the Diabetes Online Community connects me with people from all over the world, OzDOC helps me to feel a little more at home with my diabetes here in Australia.

Have a think about what you share about your diabetes with the people in your life, and what you choose to keep to yourself. Then join in by following #OzDOC on Twitter from 8.30pm Tonight AEST (GMT+10). Hope to see you there! (I’m guest co-moderating this week).

Like my blog? Follow me on Facebook: www.facebook.com/type1writes.